Article

Assisted dying

Care

Comment

Easter

3 April 2025

5 min read

I know who will be most affected by legalising assisted dying

Contemplating lent revives hard memories and raises fresh fears.

Ryan Rodrigues

Ryan is an ordained Priest in the Church of England, currently serving in south London.

A close up of a forehead bearing an ash cross marked on it.

Ahna Ziegler on Unsplash.

“What’s that - a face tattoo?”

These were the words of one person as I walked past them on the streets on a recent Wednesday, with the ashes of last year’s burnt palm-branches placed across my forehead in the shape of the cross.

The cross has been a symbol of hope for over two millennia; that even in the most painful of circumstances, darkness does not have the final say, including in death.

As a society, we don’t really talk about death that much. Margot Robbie’s Barbie was the quintessential party-pooper when she pondered:

“do you guys ever think about dying?”.

It’s no fun to dwell on death and dying, and for many of us, we put it off as long as we can. That all changed last year with the introduction of the assisted dying bill into the Houses of Parliament. Our national attention was, for a rare moment, captured by death.

As a parish priest, I’ve seen the finality of burying someone into the ground. I’ve seen the sadness in the eyes of those trying to grieve.

The words of Ash Wednesday, which remind us that we are ‘but dust, and to dust we shall return’ are echoed in the famous words that the priest recites in those last moments of burial, ‘ashes to ashes, dust to dust’. In that moment, amongst the bereaved, there is no escaping the inevitability of death. It is the ultimate statistic, 1 in 1 die.

Whilst death is of course universal and will affect us all, the impact of this assisted dying bill could have consequences for some of the most vulnerable in society.

As I reflect on my time as a Priest in East London, this is not abstract theory, but something I lived with each day. I served amongst a hugely diverse, vibrant, community in one of the poorest parts of the city. As I try to picture some the people I’ve walked alongside, I know it is these lives that will be most affected.

One of the reasons I have concerns about the bill is the prospect of these people being coerced into ending their own lives prematurely, by a world that has already told them their lives are of little value. There are already huge disparities in access to the current provision of palliative care at the end of life, particularly amongst people of colour, the disabled and the poor.

Of the 500,000 people who die each year, 100,000 do not access the care they need. This number is skewed towards ethnic minorities and those who come from poorer backgrounds.

There is much confusion and misinformation about what end-of-life care even is. Research conducted by Marie Curie shows that 1 in 5 people from an ethnic minority background believe Palliative Care is actually Euthanasia.

We only need to look at what has happened around the world when the ‘right to die’ becomes a duty to die. Even with the best of intentions, other jurisdictions show us that safeguards rapidly deteriorate and those who are already vulnerable become even more so.

I worry that the way in which this bill is being handled - rushed through, little time being given to properly chew over the profound consequences it may have - reflects the wider way we view death.

By trying to provide a ‘choice’ for a certain group of people, the consequence will be taking away real choice from those who already have little.

Yet we know that for those who do access it, palliative care can be hugely effective in improving their quality of life, and for some, they can even outlive their prognosis. During Ash Wednesday’s service, I met an elderly gentleman who was diagnosed with stage four pancreatic cancer in 2019. He was told he had five months to live. He described every day of his six-year survival since as a ‘miracle’, his eyes filled with evident joy.

Such a blessing stands in stark contrast to the lonely final days of my 96-year-old great grandmother. She was suddenly taken ill during the Covid-19 pandemic and was frantically rushed to a hospital. Amidst the chaos, exasperated by the restrictions against seeing family that were in place at the time, I distinctly remember confused conversations about placing her in a care home for her final days. It was clear she needed a lot of specialist attention, more than our family could provide ourselves. As she was discharged to stay with our aunt, she never did reach that care home, as she died at home. She was buried in our local cemetery, with our family watching on Zoom.

My final memory of my great-grandmother will be the FaceTime call we shared when she was taken to hospital, with the poor data connection and shaky picture. I am so grateful for the few family members who were able to be by her side when she died, but I’ve often wondered whether she fully received the care she actually needed during those final days, in the way she needed it.

What my great-grandmother didn’t have a lot of at the end of her life was time.

That’s also true for this bill. Concerns have been raised that only five hours of debate were given to this Bill in the chamber, comparatively short for a change in the law of this magnitude.

I worry that the way in which this bill is being handled- rushed through, little time being given to properly chew over the profound consequences it may have- reflects the wider way we view death.

Do we view death - and indeed the dying- as something to be shoved to one side, not spoken about in the hopes we can avoid its impact? Or do we view death as an important moment to review who and what matters most in life?

Perhaps for some, the fact that Christians devote a period of 40 days to dwell on death may be one of the mysteries of faith. However, perhaps it’s not such a bad idea after all. Death may bring with it fear, grief and pain and so we tend to avoid it. But do we risk missing out on much more? As we head into Easter, the cross still serves as a powerful reminder that, especially in death, Hope can be found, that Good has triumphed over evil, and Light shines even in the darkest of places.

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Article

Care

Change

26 July 2024

6 min read

Are we forgetting how to care?

The profound act at the heart of nursing.

Helen Cowan

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

A nurse bends beside a bed and talks to a patient

Marie Curie.

Recently, at a nursing leadership programme in Oxford, attendees focused on the fundamentals of care. Have we forgotten how to care? What can we re-learn from those who pioneered an ordinary yet profound act that affects millions?

Anam Cara is an old Gaelic term for ‘soul friend’, a person with whom you can share your innermost self, your mind and your heart. It is a term that Tom Hill, former chief executive at Helen House Hospice in Oxford, used to describe the relationship between his staff and the thousands of children and their families who passed through their ‘big red door’ in its first twenty-five years. The hospice (or ‘loving respice’ as it became known) had been founded by Sister Frances Dominica in 1982.

Other care in this country can also trace its religious roots. Between 1048 and 1070 in Jerusalem, the Order of St. John was founded for the purpose of helping pilgrims (“our Lords, The Sick”) who had become lost, weary, or beset by other difficulties while on their way to the Holy Land. Today, in the United Kingdom, the British Association of the Order has extended care to older people first in almshouses and later in care homes. A trustee for ten years was John Monckton, a man of ‘considerable talent, enormous integrity and deep religious conviction’; his tragic murder in 2004 led to the creation of the John Monckton Memorial Prize, which recognised and rightly celebrated commitment to care by care workers.

Today, across the world, seen and unseen, nurses, carers and families continue to provide compassionate care. “Assisting individuals, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge” is the very essence of nursing, captured by ‘architect of nursing’, researcher and author Virginia Henderson in 1966. Meeting more than basic needs such as breathing, eating, drinking and eliminating bodily waste (which are of essential importance), Henderson recognised the role of the nurse in enabling humans to communicate with others, worship according to their faith, satisfy curiosity and sense accomplishment.

In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care?

An uncomfortable truth brought out in healthcare reports such as the Final Report of the Special Commission of Inquiry (The Garling Report) 2008, and the Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry (The Francis Report) 2013 is though that this type of nursing is too often done badly or even missed, leading to pressure injury, medication errors, hospital-acquired infection, falls, unplanned readmission, critical incidents and mortality. According to nurse scientist and scholar Professor Debra Jackson, “missed care occurs much more frequently than we might think”. She cites a systematic review in which ‘care left undone’ on the last shift ranged from 75 per cent in England, to 93 per cent in Germany, with an overall estimate of 88 per cent across 12 European countries’.

In one offensively-titled paper, “Shitty nursing - the new normal?” (in which the authors apologise for the title but not the questions raised), real-life pen portraits are drawn of patients lying for hours on hospital trolleys, immobile through infection or injury, ignored by staff. Whilst acknowledging contextual factors for poor care, such as a shortage of nurses and resources, the authors argue that circumstances cannot be the sole cause of missed nursing care.

A report published by the University of Adelaide, School of Nursing, has called for nurses to ‘reclaim and redefine’ the fundamentals of care. It asks whether the cause of the problem (of missed nursing care) lies “deep in the psyche of the nursing profession itself?” “Has something happened to the way modern nursing views and values caring?” it continues. “Indeed, is nursing in danger of losing its claim to care? In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care? Or is this a broader social pattern where individuals are less inclined to show kindness, compassion, and care for others even if it is a necessary requirement of the job?”

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness.

Writing in the British Medical Journal, Professor of critical care medicine Peter Brindley and Consultant in intensive care Matt Morgan wonder whether doctors also “too often default to high-tech and low-touch” when patients are dying – a time “when community and connection matter most”. They powerfully begin with a mother’s comment: “Humans are gardens to tend – not machines to fix.”

Professor Sir Al Aynsley-Green, the first National Clinical Director for Children in Government and former Children’s Commissioner for England, and past president of the British Medical Association, suggests that we as a society need a “momentum for compassion”. Struck by the extremes of compassion witnessed during his wife’s treatment in the last years of her life, Sir Al wants to see a cultural transformation in healthcare: for compassion to be a key operating principle in NHS and care settings, led by the Chief Nurse’s Office; for every organisation to promote the importance of compassion at the professional level; for the views of patients and families to be sought regularly; for much earlier and better focus on compassion in undergraduate and postgraduate teaching programmes for all staff; for compassion to be inspected against by the Care Quality Commission; and for a willingness to encourage staff at all levels to expose poor practice as well as celebrating excellent care.

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. “It’s putting yourself into somebody else’s shoes – and doing something about it.” Recently appointed the UK’s first Visiting Professor in Compassionate Care at Northampton University, at the age of 80, Sir Al certainly is doing something about it. He has made it his new purpose in life to “embed compassion into every aspect of care”.

Like Sir Al, Queen Elizabeth II, the UK’s longest serving monarch, espoused compassion, in word and deed. Living a life of compassionate service, the Queen made clear that her Christian faith was her guiding principle. She speaks of Jesus Christ as ‘an inspiration,’ a ‘role model’ and ‘an anchor’. “Many will have been inspired by Jesus’ simple but powerful teaching,” she said in her Christmas Broadcast, 2000. “Love God and love thy neighbour as thyself – in other words, treat others as you would like them to treat you. His great emphasis was to give spirituality a practical purpose.”

When nurses do unto others as they would have done unto themselves, and act as role model to colleagues, not only do patient experiences of care and their outcomes improve – but so does job satisfaction for nurses: a critical factor in nurse recruitment and retention – the biggest workforce challenge faced by healthcare organisations. Across the UK, there are currently more than 40,000 nursing vacancies, and thousands of burnt-out nurses are leaving the profession early. Whether nurses decide to stay or go is driven in part by their daily experience at work. The late Kate Granger, Consultant in medicine for older people, inspired Compassionate Care Awards in her name, envisioning that such a legacy would drive up standards in care - and surely also help retain nurses, through restoring a sense of pride, achievement and fulfilment to the nursing workforce.